Anyone have Cutaneous T Cell Lymphoma?

My son has recently been diagnosed with CTCL. I am very interested in treatments that will be used. Currently his skin is a vivid, red and covered with scaly skin that he continuously sheds.

@loribmt Good morning Lori, I wanted to update you on my first round of radiation. Even though they explained the treatment to me in my initial mapping, I wasn't really sure what to expect. The plastic boot they had made for my foot and lower leg was a much tighter fit this time as the tumors now seem to be affecting my circulation and causing only that leg to swell. (It's been about 3 weeks since the initial consultation) They were finally able to snap it on place, re-mark everything, and complete the treatment. It did get a little warm on my skin, but nothing unbearable. It could be my imagination, but I did feel within the hour a horrible metallic taste in my mouth, as well as it becoming as dry as the Sahara desert. All and all though, this was doable. I have 3 weeks of this and I am feeling very positive about treatment and results.

@penelopem Good luck with everything today! This is a new experience for you so I know it can be a little nerve wracking. But it’s the first step to controlling your CTCL and a step towards putting this all behind you. ☺️ So take a deep breath and slowly let it go… You’ve got this!
Let me know how the appointment went for you today, ok?

@loribmt Good morning Lori, I just wanted to give you an update. I received a call late yesterday afternoon to come today for the first radiation treatment at 4:00 this afternoon. I'll keep you updated.

@loribmt
Hi Lori, thank you for the email. The tumors are not where the redness/rash originally started. However, they are where new areas had popped up on the inner area of my arch and ankle the past year. Some of the area looks very normal and haa healed, and the other area has the tumors. I'm waiting for a call from the radiation center to let me know when my radiation treatment will start.

Hi @penelopem. Welcome to Mayo Connect. You’re absolutely posting in the right discussion to share your experince having Cutaneous T Cell Lymphoma. Kudos to you pushing for answers by switching to another dermatologist in order to get the correct diagnosis! It’s important to advocate for your health when you’re suspecting something isn’t right.

Are the small tumors located near the same area where your original symptoms occurred? Wishing you a positive outcome with the radiation treatments. When will you start the treatment?

Not sure if I'm putting this in the right place. I was officially diagnosed with CTCL in 2020 upon switching dermatologists. The second dermatologist took one look at my leg and said he was pretty sure it was not eczema which my previous physician had been treating me for. The biopsy came back and there was my diagnosis. I wish I could help you with remedies on itching. I have only had small bouts of itching and the redness has pretty much been contained to one leg and below my knee. I just recently started getting small tumors which they will be scheduling 3 weeks of radiation for. I hope someone can give you a good remedy for your itching. Wishing you the absolute best.

Hi. Well I am really sorry you are waiting for a diagnosis. I am “pleased” to have another person to discuss multiple cancer diagnosis. I had non-Hodgkins Lymphoma in 1988. CTCL in 2023. Breast cancer in 2026. I am special - 3 separate cancers and every doctor denies they are related. Having breast cancer is complicated by the treatment I had for my other cancer. I had radiation and tons of chemo with no accurate information on what treatments I had since records don’t exist from 1988. So my only option is a double mastectomy. I am not sure if you are waiting for appointments, waiting for tests, and therefore a long wait for surgery and treatment. I know people on this site don’t like it if we complain about the medical system but it is pretty terrible at the moment. I felt a lump in January after a clear mammogram in November 2025 so this is an aggressive cancer. I will only have surgery in April. I wanted emergency surgery but I am waiting. I even had to find my own oncologist and persuade her MA that I deserved an appointment. How many people have 3 cancers in a lifetime. Why could I not go to the front of the line.
When I was in South Africa recently I saw oncologist and a dermatologist and after them reviewing my medical records plus a thorough examination said I did not need to continue with the light treatment. Needless to say treatment of CTCL was expensive. What I am trying to say get another opinion on how to treat your CTCL.
For the breast cancer getting an appointment was difficult and a second opinion would take months. So I am going with my instincts, after looking at all my options and having a double mastectomy. Get really good biopsies, multiple specimens make a big difference. Then you need MRI of breasts - not fun, MRI of abdominal and pelvis. Then the wonderful PET scan. Maybe you will be lucky enough that either your oncologist or PCP will discuss the results. Good luck.
Stay in touch maybe we can help each other.

Welcome, @valentin81. I moved your question to this existing discussion about cutaneous T-cell lymphoma:
- Anyone have Cutaneous T Cell Lymphoma?https://connect.mayoclinic.org/discussion/cutaneous-t-cell-lymphoma/

I did this so you can connect more easily with others like @mrb2491 @lancasterva @cessnaman @norseman44 @shari715 and others.

Valentin, it is normal to feel worried and anxious. This is all so new for you. What type of skin issues are you experiencing? When will you begin treatment?

Alguien que tenga o haya tenido problemas en la piel por linfoma tipo T?
Acabo de ser diagnosticado y estoy muy preocupado y ansioso ya que no se que pasará después🥺 aun no recibo tratamiento estoy en espera de hacerlo.
Le agradecería a quien pueda compartir su experiencia por favor 🙏🏻